It’s been unusually COLD in Texas these last few days.  We had almost 4 inches of SNOW in Houston, Austin had over 1 hour of snow flurries and it seems the white stuff was received as far South as Corpus Christi, TX!!

When the temperatures plunge I do enjoy having the opportunity to have a few chills….the summers here have been so terribly brutal the last two years.  While I do enjoy the cooler weather, it brings a new array of problems for me.  I am moving more slowly and finding that the stiffness I have in the morning goes away more slowly.

Dealing with the stiffness and inability to move freely seems minor to me compared to sweating profusely in the summer!!! LOL.  I know that there are many people who do prefer the warmer temperatures, but I like the cold weather.  Here are a few tips I’ve learned for dealing with the stiffness and slowness of movement that I’m having this winter.

Taking the time to THINK about moving more slowly and deliberately is a must these days.  While the stiffness and slowness of movement seem to be inevitable – I also have to slow down my thoughts so that I am not purposely rushing about.  In the hustle and bustle of the holiday season we are all impatient and rushing about.  I am thinking about putting one foot in front of the other.  I am thinking about how I move in a crowd so that I don’t get “caught up” in the flood of movement.  THAT’s when my feet don’t move so quickly and I stumble.

Last week, while getting off of an airplane I used my cane the entire time.  I moved to the side of the jetway and walked slowly telling those behind me to go on around.  I smile and tell them, “I’m moving a little slowly today.” and this gives everyone the green light to rush on by me.

The stiffness in my body always responds to heat and warm moisture.  If I know I’m going out where there will be other people I try to take a long bath in order to warm up my muscles before I leave.  Then I stretch slowly working my muscles into more flexibility.  It’s hard to take the time to do all of this when I have to get out of the door – but it’s well worth it.  Stretching and warming up the muscles ensure that I can move more fluidly.

If I’ve been sitting for awhile I try to move my feet and legs frequently while sitting.  Then rising from a seated position isn’t quite so difficult.  And lately, I’ve been using my cane a lot.  It gives me the stability I need and the reminder I need to SLOW DOWN while walking.

But most of all….this week I stayed inside the house when it snowed.  I took a few pictures of my husband with snowflakes in his hair….but I stayed out of the wet, frozen stuff to make sure my footing was not compromised.  I know there are many of you who do not have the luxury of staying out of the slushy, frozen snow.  So, the most helpful thing I know is to be careful, step gingerly, take your time.  And if it looks dangerous, just don’t go there.

Stay warm!

Before Thanksgiving I visited my Neurologist for a new supply of the Neupro patches and to check in for the trial.  Please understand that this is a PHASE 4 trial to get the patches back in distribution in the United States.  This is the FINAL phase for Schwarz Pharma to get these patches back into distribution.

As I mentioned in an earlier post – the patches are no longer available for U.S. citizens to purchase in Canada.  This is a significant detail to note because if they are not for sale to Americans from Canada that’s because Schwarz Pharma wants the U.S. patients to buy them as soon as they are available in the U.S.

Also, it’s a rumor from the PA at my Neurologist (he won’t say if the Schwarz Pharma rep told him this directly – but I believe she did) that the patches will be available in the U.S. after the first of the year.  I’m hoping this means February at the latest.  HOWEVER, we must take this as pure rumor since I don’t have any “official” statement from the Schwarz Pharma rep.

So, please, hang in there.  Know that the patches are coming soon.  If you purchase them from Israel or England, just purchase enough to get you through until February – and I will post any additional information as it becomes available.

I know that so many of you are suffering and that the Requip makes you ill.  Please hang in there and I am praying that the New Year will give us all the needed relief we so desperately desire.

Allie

The holidays bring many types of emotions to the surface – for PWP and those who are not suffering with Parkinson’s Disease.  For those of us who are responsible for planning and cooking meals, preparing our home for visitors, and expending our energy units to purchase gifts, wrap them and mail them, the holidays can seem like a monster waiting to lurch.

So, I’d like to offer a few suggestions for PWP and non Parkinson’s people too.  These suggestions are some of the things I’ve learned over the years to help de-stress in holiday planning and preparation.

1.  ALLOW others to help out.  This may mean that you ask them to bring a dish to the holiday meal or assist in the preparation.  In the fervor to prepare a great holiday meal, we actually place ourselves in the position of being completely exhausted – and unable to enjoy the company of those we love.

2.  IT DOESN’T HAVE TO BE PERFECT!  We only have “x” number of energy units allotted to us each day.  The holidays are time to enjoy the company of the people we love.  Don’t burn up all of your energy units on preparations that don’t really matter.  Leave enough of your energy units so that you can actually ENJOY your visitors.  Besides, those who love you will still love you with dust on the furniture!

3.  IF YOU TRAVEL, be sure to take snacks and a water bottle with you.  If you are flying, those airport delays and runway delays may leave you without food to take with your medicine.  Common sense tells us to “be prepared” – but sometimes we forget that we need to plan for the unexpected!  Even if you travel by car or bus, prepare for the unexpected so that you will be able to take your meds without interruption.

4.  GET SOME REST!  Yes, this is me talking to myself!  When I’m with my family I don’t want to miss a minute of being with them.  I rise early to be with the kiddos, and will try to stay up late to be with the adults.  Do what is in YOUR best interest – and get the rest you need.  Your rest is critical to having a good attitude, being attentive and having some normalcy in your routine.

5.  BREATHE!  So many times when stressed, in a hurry or just trying to maneuver through the day I find myself holding my breath!  Be sure to remember to breathe deeply.  Take a minute to close your eyes, breathe deeply into your diaphragm and exhale through your mouth.  Do this 5-6 times and keep your shoulders down, chin level to the ground  with your head held high.  You’ll be surprised how this helps you to relax, get the oxygen to your brain and de-stress you in just a few minutes.

Enjoy your holidays – and remember – it’s only another day out of 365 this year, but it’s a time to fellowship with those we love and rejoice in the blessings we have.

 

December 6th will be 20 years since Mom slipped away into eternity.  Seems like yesterday I told her good-bye and kissed her when they took her into surgery.  Seems like yesterday when I waited and waited for the doctor to come into the waiting room to give me the update.

Today I’ve really missed Marie Nana…my mother.  I went to another doctor’s appointment today – and when I left I sat in the car and cried.  How I wish I had my very best friend, my mom, around to talk to when bad news comes.  How I wish my very best friend, my mom, was around to discuss some of these test results.  She was so smart and analytical.  Mom could cut to the heart of the matter quickly – and even see some of the “hidden” motivations that some people work hard to hide.

Yup, I’m missing Mom.  For those of you who view your parents as “pains” and do your best to ignore them or stay away from them, shame on you.  My Mom left when she was 65 yrs old.  She left too early, and had many, many more years in her body – but her little heart just couldn’t make it through the surgery.  Yup, I’m missing Mom.

When you see your Mom and you cringe because she’s losing her memory, gritching at you (because you’re the only one to listen to her) or if she forgets what you just said, I have one thing to say……enjoy the days you have with her.  Because the days with her will soon be gone – and then you’ll be left alone with those unsaid things, unexpressed feelings, and an empty chair where she once sat.

Yup, I miss my Mom – and someday, maybe someday soon, I’ll be able to hold her hand again….in heaven.

Since I am able to manage my Parkinson’s Disease well with my meds – I haven’t given much thought to the caregivers who devote their lives to assisting their family members and loved ones.  Today that changed.

Once sleep was so elusive for me, but lately it’s been more regular.  The stormy front moved through last night about 3AM and it awakened me.  Rather than eating ice cream in the middle of the night, I decided to read some blogs.  I found a poignant and rather sad blog from a caregiver named Peter T.  He is caring for his wife and she has PD and dementia.  My heart hurt when I read portions of his blog.  Please take a few minutes and read some of Peter’s entries: http://thecaregivercalling.com/

Caregiving is a thankless place to be.  The caregiver makes so many sacrifices – on so many levels – and does not expect anything in return.  This type of courage and self-sacrifice is evident in Peter T.  He is devoted to his wife, Mary Ann, and cares for her physically, emotionally and medically.  His persistence and ability to laugh in the face of some very sad times caused me to pause and think.

When I am at the stage of PD where Mary Ann is now – will my family be able to face my disease with the courage and honesty I see now in Peter T?  I hope so.

For all of you caregivers who sacrifice so much for those you love, God bless you.  I am lifting you up in my prayers this morning.

Last week I took off a few days and went to Durango, CO with a friend.  When in the midst of the work world I forget about the value of rest, the value of relaxation, the value of doing nothing.  Life is measured by achievement, success by completion, and worth by how much money we make.  No one tells us to relax, rest and do nothing to increase our value in society!  Yet, that’s exactly what this trip taught me.

Those of you who know me know that I’ve begun felting wool, recycling wool sweaters and blankets and making laptop sleeves, purses, tea cozies and doggie sweaters from the wool.  My friend accompanied me as we combed through thrift stores looking for 100% wool.  Needless to say, in Colorado ski country, we hit the jackpot!  I had so many great woolen items, I had to ship them home in a large box!

I didn’t take my laptop computer on this trip.  I didn’t answer work emails.  I put on my “out of office” and ignored the problems and quasi-crisis knowing that those who were monitoring my messages were fully capable of handling every problem, question, and inquiry.

Instead, I spent time knitting, sipping wine, rocking in the rocker, laughing and conversing.  It was restful, truly restful.  And with all of that rest, my mind cleared.  I realize that I do need to spend more time doing the things I enjoy – knitting, felting, fulling, and creating from natural fibers.  Funny how a bolt of lightening hit me while standing on the sidewalk in Downtown Durango – I realized I want to do the things I enjoy….I haven’t allowed myself the time to really consider that before.

Having a realization, an epiphany, and then actually doing something about it – well, that’s two different things!  I know that the time I have to sew silk, bead, and work with my hands is limited by my PD.  EVERYTHING is limited by my PD, IF I allow myself to succumb to that attitude.  Yes, I may drop beads, have to rip out stitches that are crooked or malformed, but at least I’ll be doing the things I enjoy.  Moving slowly and more deliberately is frustrating and sad for someone like myself, who is “high energy”.  But, if I never take the chance, if I never try – then I’ll continue being a good workbot….and life will become more sad.

So, the message today – rest is vital, important, and can produce some special results.  Resting in Colorado meant an epiphany for me….so resting is a blessing.

From a Reader:

re: Neupro Trial
I learned today that enrollment in the metro Detroit Neupro trial I mentioned recently is open until 11/30 only.  So don’t delay (HA!)  Contact me at mcws@juno.com for info
Cathy

INFO from a READER:

The information you provide and the uplifting personal side are fantastic. I’m hoping you can help me spread the word about a Neupro Patch trial. I used the patch with GREAT success for severe RLS, and like so many was devastated by its recall. After a great deal of effort (begging, pleading, etc.) my neurologist is now working with UCB on a trial of the patch. They are looking for more patients. Is there any way that you can help me get the word out? This trial is being conducted in the Detroit metropolitan area, and would require a visit every 3 months. Considering the cost of the patch if people are buying out of the country, it might be cheaper to fly to Detroit! I am in absolute HEAVEN after just a few days back on it and would love to share the joy!! I can be reached at mcws@juno.com

A new and distressing symptom has started. I’m drooling a LOT at night and I awaken with my pillow wet and my face wet.  This has not affected me during the daytime hours, and so I’ve begun some research to find out how to deal with the excess saliva or sialorrhea in medical lingo.

I’ve found that many PWP (people with Parkinson’s) are dealing with this issue and there are some creative and sensible ways to reduce the amount of saliva or deal with leaking saliva without resorting to drug therapy.  At this time in my life, I really do NOT want to take additional meds for any reason.  I am so hopeful that managing the current medications I take will be effective in helping me stay active and effective in  my personal and work life without adding another drug.

While there are some good drug therapies out there to deal with drooling, I will refrain from addressing those here and let you pursue that with your own neurologist or physician.

PWP (people with Parkinson’s) do not have excessive saliva production.  The normal amount of saliva produced by most people is 33 or 50 ounces daily.  That’s roughly 4 to 6 cups of saliva per day.  That’s a LOT of saliva that we normally swallow and don’t notice!  The problem with drooling occurs when the saliva is not being swallowed normally.  In PWP (persons with Parkinson’s) the muscles in our bodies are struggling to operate normally.  The lack of dopamine in our brains directly affects the neural circuits in our brains and that affects our movement.  The muscles in our throat are affected so our automatic swallowing decreases and saliva collects.

Becoming more conscious of swallowing can often help reduce the drooling.  There are strategies to assist in becoming more aware of the need to swallow:

1. Chew gum or hard candy (hopefully sugar-free) so that the tactile clue from that activity encourages swallowing.
2. Decrease the amount of sugary foods you intake since sugar increases the production of saliva.
3. Keep your head tilted upwards with your mouth closed – when not speaking or eating.
4. Breathe through your nose and keep your lips closed.
5. Since fluids are lost when drooling, be sure to drink more liquids to stay hydrated.
6. Drink from a straw whenever you can since that helps to exercise the muscles in the face that keep your lips shut.  Strengthening these muscles will help the saliva to stay in your mouth as you practice keeping your lips shut.
7. And as I have found that I drool at night – use a small towel on your pillow to absorb the saliva.

During my research on this topic I have found that some PWP respond to the juice in pineapple to help thin their saliva.  For people who are more severely affected by Parkinson’s Disease their caregivers have crushed up pineapple pieces and placed small pieces in their mouths.  I know that the acidity in fresh pineapple can bother some folks. So, I would suggest doing this with small canned pineapple pieces.

The thickening of the saliva can also be a problem for PWP.  Drinking fluids, juices and water are crucial to keeping hydrated.  Some of the drugs we take for PD can also cause our mouths to feel dry and sticky.  Then coughing happens because of the thickness of the saliva and difficulty swallowing.  In this situation others have suggested the pineapple juice diluted with water since pineapple contains enzymes that thin the saliva.

Above I mentioned using a straw to drink liquids.  Using a straw is good for strengthening the mouth and facial muscles.  However, I do know that speech therapists offer excellent exercises that can help in that as well.  If your swallowing (or not swallowing as the case is in drooling) continues to cause problems, I would encourage you to mention this to your doctor/neurologist and get a referral to a speech therapist.

Overall my research has led me to the conclusion that there are no simple answers or solutions to this problem.  As mentioned earlier there are drugs (Botulinum toxin injections) that can be injected into the mouth, or surgery to reduce the amount of saliva that is produced.  But short of drug and surgical therapy there isn’t any completely effective way of solving this problem.

So, as we continue to adapt to Parkinson’s Disease in every other facet of our lives – we continue to adapt to the onset of drooling as well.

Keep your sunny side up!

We can NEVER forget that drug manufacturers exist to make a profit in every market segment.

Today UCB announces its’ interim report for the first nine month (three quarters) of 2009.

“Since the approval by the European Commission in June 2009 for UCB to
again promote Neupro® for Parkinson’s disease, and to launch the drug
for restless legs syndrome, more than 33 000 patients are currently
being treated with the drug in Europe. European neurologists have
welcomed the drug’s return and the cold-chain storage and
distribution system is well-accepted. Neupro® is now available in
Germany, Italy, Spain and the U.K. and in nine smaller European
markets for Parkinson’s disease. It is launched in Germany and the
U.K. and two smaller European markets for restless legs syndrome.
Launches in other European markets will follow in the coming months.
In the U.S., an extensive update on Neupro® and cold-chain storage
and distribution was submitted to the Food and Drug Administration
(FDA) in June 2009. Dialogue with the FDA continues. UCB expects to
be able to make Neupro® available for U.S. patients again during
2010.
UCB will communicate its view on the sales potential of Cimzia,
Vimpat and Neupro with the publication of its 2009 results on 2 March
2010. “  For the PDF version of this document, go to: http://hugin.info/133973/R/1349065/325044.pdf

This report focuses on the projected profits that UCB anticipates in this FY for these three products.  Of course, the Neupro patch is the product in which I am most interested.  Additionally, from the number of hits on this blog and the comments I receive, there are MANY readers who are also interested in the upcoming release of the Neupro patch for Restless Leg Syndrome and Parkinson’s Disease.  UCB is facing the reduction of revenue as Zyrtec’s patent expires.  Therefore, the release of the Neupro patch in the United States will be an important revenue stream for UCB in the 2010 to 2012 time frame as these other patents expire.